Help Prevent the Loss of One Newborn Baby a Week

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17/07/2015 13:39 BST
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Updated
17/07/2016 10:59 BST

My partner Scott and I should have been sharing our son Edward Gili's first birthday in May this year. But instead of having that exciting first year to celebrate and many more to look forward to, we had just nine precious days to spend with our beautiful son.

Edward was cruelly taken from us as a result of contracting group B Strep infection, or GBS, at birth. On average, one newborn baby a day in the UK develops GBS infection. One baby a week dies from GBS infection. One baby a fortnight who survives the infection is left with long-term disabilities - physical, mental or both. It is the UK's most common cause of severe bacterial infection in newborn babies, and of meningitis in babies under three months. But you might not have heard of it - I hadn't until after Edward was born, when it was too late. So that's why I've started a petition on Change.org that calls for every pregnant woman as a matter of course to be informed about GBS, to be given the most effective test available to see whether she is a carrier and, wherever necessary, be given antibiotics during her labour.

The first I heard of this lethal infection was just after I woke up from a caesarean under general anaesthetic to be told that my new baby was being cared for in the special care baby unit, fighting for his life. As I've come to know more about GBS and the numbers involved - around a quarter of women carry GBS - how can it be that I wasn't told about in antenatal appointments?

The standard NHS approach to this once-a-week killer appears to be to bury its head in the sand. Your midwife is not going tell you about it because she isn't able to test you for it, unless you are already considered to be at risk. And in the vast majority of women carrying GBS, there are no symptoms.

One of the inevitable questions after losing your baby son is "why me?" For me, the answer to this unfathomable question is sometimes wrapped up in groundless guilt that I should have known about GBS, I should have listened better, I should have read more to find out about it. This is a recognised and preventable infection and I just didn't do my job well enough to stop it happening to me and, more importantly, my son. But when you look at the numbers and the NHS's ostrich-like approach to GBS, the question becomes: "why not me?" because without routine information and testing, it is basically a guessing a game. A much more constructive, indeed critical, question I want to pose the policy makers, chief medical staff and guideline setters: "why anyone?"

I know that no testing regime can be 100% fool proof, but that shouldn't stop us looking at the best risk mitigation. Under the principles of risk assessment, you examine the dual axes of the likelihood of the risk occurring and the severity of the harm that could be caused, to determine what mitigating action is required. As death of a new born has to be at the very top of the severity axis, how small does the likelihood of it occurring have to be to justify selecting the mitigating action of "do nothing and say nothing"?

It would seem that countless devastated families suffering, 365 infected babies, 52 dead babies and a further 26 left with long-term disabilities every year is too small a number for the NHS. Even when the mitigating action they could implement is completely safe and of nominal cost - the GBS-specific ECM (enriched culture medium) test costs the NHS £11 each and the antibiotics used in labour cost just pennies.

That's not to say the NHS won't take it very seriously if you're lucky enough to find out about GBS some other way and then pay privately for a test that comes back positive. Your notes will be clearly marked, so that no one can miss the fact that you are GBS positive, and arrangements made for the highly effective preventative antibiotics intravenously during labour and monitoring of your baby once born. It seems that no one disputes the very real and potentially life-threatening risk of being GBS positive in labour, which just makes the lack of information and effective testing in the NHS all the more indefensible.

So far about 170,000+ people have supported this campaign for change. Is helping to prevent the loss of one newborn baby a week enough for you to sign too? As the mother behind this number for a week in May 2014, I hope so.